Topic Contents

Focuses on palliative care as a holistic—body, mind, spirit—approach to dealing with serious illness. Explains that palliative care team guides talks about treatment, pain management, hospice care, family needs, and legal issues.

Palliative Care

Topic Overview

What is palliative care?

It is hard to live with a serious illness. You may
feel lonely, angry, scared, or sad. You may feel that your treatment is doing
more harm than good. You may have pain or other disturbing symptoms.
Palliative care can help you and your loved ones cope
with all of these things.

Palliative care is a kind of care for people who have serious illnesses. It is different from care to
cure your illness, called curative treatment. Palliative care focuses on
improving your quality of life—not just in your body, but also in your mind and
spirit. Sometimes palliative care is combined with curative treatment.

The kind of care you get depends on what you need. Your goals
guide your care. Palliative care can help reduce pain or treatment side
effects. Palliative care may help you and your loved ones better understand
your illness, talk more openly about your feelings, or decide what treatment
you want or do not want. It can also help with communication among your doctors, nurses, and loved ones.

Why would I want palliative care?

Palliative care providers are interested in what is bothering you
and what is important to you. They want to know how you and your loved ones are
doing day-to-day. They understand that your illness affects not just you, but
also those you love.

Your palliative care providers will ask questions about how your
illness affects your emotions and spirit. Then they will try to make sure that
your medical care meets your goals for your body, mind, and spirit. They will
also help you make future plans around your health and medical care.

You might see a palliative care provider just once or maybe more
often. He or she will work with your other doctors to give you the best care
possible.

How is palliative care different from hospice care?

Palliative care is for a person of any age who has a serious illness. For example, you may want palliative care while you are getting
treatment for heart failure. Palliative care could help you manage symptoms or
side effects of treatment so that you will feel better.

Hospice care provides medical services, emotional support, and spiritual resources for people who are in the last
stages of a serious illness, such as cancer or heart failure.

Who is involved in palliative care?

Palliative care actively involves you and your loved ones.
Together you will work with health care providers in your doctor's office or
your home, or in a hospital, nursing home, or hospice. If you are interested in
palliative care, talk with your doctor. He or she may be able to manage your
palliative care needs or may refer you to someone who is trained in palliative
care.

How can I work with a palliative care team?

Good communication is a large part of palliative care. Your
palliative care providers will encourage you to listen to your feelings and to
talk about what is most important to you. They will also try to explain things
to you and your loved ones in ways you can understand. Then they will work with
your primary care doctor to make sure that your care is meeting your goals,
such as managing disturbing symptoms or making future plans.

You may talk about anything and everything during a palliative
care visit, including:

Treatment.

Pain and medicine side
effects.

Emotional and social challenges, such as helping your
family get along better.

Spiritual concerns.

Goals and
dreams.

Hospice care.

Advance directives. Advance directives are instructions to your doctor and loved
ones about what kind of care you want if you become unable to speak for
yourself.

The Growth of Palliative Care

Palliative care is not a new concept. Some doctors, nurses, and other health care
workers have been giving this type of care for a long time.

The number of palliative care providers around the country is
increasing. So is the number of programs to train health professionals in
palliative care. More and more health professionals are realizing that
palliative care is "good medicine." They think that palliative care can help
anyone who has a serious illness.

How Palliative Care Can Help You

Palliative care can help you feel better as a whole person—in your
body, mind, and spirit. It helps you focus on "the big picture" of your life.
Palliative care includes your family and loved ones.

Sometimes talking with someone who is not a friend or family member
can help you see more clearly. This person could be a palliative care provider.

It is important to talk about your goals and wishes sooner rather
than later. That way, you, your loved ones, and your doctors know what you
want. If you choose, you can be
a part of every decision about your care.

Palliative care works best with open communication. Try to focus on
what you can do to improve communication with your palliative care provider. If
you do not understand what is being said, ask questions until you do. You may
want to write down your questions before your appointment or to bring a loved
one to your appointment. Important questions to ask include:

What is my diagnosis?

What are my
treatment options?

What are the side effects of these treatments?

What do you think will happen if I choose not to treat my
illness?

How long do you think I have to live?

How
soon do I need to make a decision about which treatment to use (or to not
use)?

How will my illness and care affect my loved ones?

You might talk about many things during a palliative care visit,
including:

Treatment. You get to decide
how well your treatment is working and if you want to continue it. Maybe you
really want to see your grandson graduate, so you decide to continue treatment
even though it makes you feel sick. Or maybe you prefer to stop or limit
treatment because you would rather focus on the quality of your life rather
than the length of your life.

Pain and treatment side effects. You may think you have to live with side effects or
pain. But a palliative care doctor can often prescribe medicines to help with
these. All types of treatment have pros and cons, but you can work with your
doctor to find the right mix of medicines for you.

Emotional and social challenges. A palliative care team can help you and your loved
ones talk about feelings and solve problems. Palliative care team members may talk to you about
your feelings about living with a serious illness. They may help
you work through stressful family situations. They might even be
able to help you arrange transportation or find resources to help pay for medicines.

Spiritual concerns. It can be
scary to think about living the rest of your life with a serious illness. You
may be struggling with questions such as "Did I do something to deserve this
illness?" or "Has my life been meaningful?" or "What is going to happen to me when
I die?" Your palliative care team may include a chaplain or spiritual advisor who can help you talk through these kinds of
questions.

Goals and dreams. Maybe you
have always wanted to go to the Grand Canyon or be reunited with a long-lost sister. A palliative care team may be
able to help you feel well enough to make these goals and dreams come true.

Hospice care. When you, your
loved ones, or your doctors feel that you may have less than 6 to 12 months to
live, you may want to think about hospice. This kind of care is given wherever you are, whether that is a nursing home, hospital, or your own home.

Advance directives. You can fill out legal papers called advanced directives. These important papers tell your doctor about the kind of care you want at the end of your life. For example, you
decide if you want doctors to use machines to keep your body alive when it can
no longer do so by itself, and you can say how long you would be willing to live on these
machines.

You may find it helpful to read
personal stories about how palliative care has helped
others.

Is Palliative Care For Me?

Health professionals and hospitals are using palliative care more
and more. They find that patients and families like this kind of care.

Anyone who has a serious illness can benefit
from palliative care. You can get care to treat your illness and palliative
care at the same time. You do not have to choose one or the other.

Some treatments can be curative or palliative. For example,
radiation is often a curative treatment for cancer. But it can also be used to
help control cancer pain. When it is used to control pain and not to get rid of
cancer, it is called palliative radiation.

If curative treatment is no longer working, a palliative care
provider can help you decide if you want to continue that treatment. When the
time is right, your palliative care provider may talk to you about hospice
care. This is care for people who are in their final weeks or
months of life. For more information, see the topic
Hospice Care.

Where to Go From Here

Write down any questions you have about palliative care. Talk about
your questions with your doctor during your next visit. If you would like more
information on palliative care, see the Other Places to Get Help section of
this topic.

Other Places To Get Help

Organizations

Caring Connections

Phone:

1-800-658-8898 help line

Phone:

1-877-658-8896 multilingual line (toll-free)

Phone:

(703) 837-1500

Email:

caringinfo@nhpco.org

Web Address:

www.caringinfo.org

Caring Connections, a program of the U.S. National Hospice and Palliative Care Organization (NHPCO), seeks to improve care at the end of life. Caring Connections provides free resources, including educational brochures, advance directives and hospice information, and a toll-free help line for people looking for quality end-of-life information.

GetPalliativeCare.org

1255 Fifth Avenue, Suite C-2

New York, NY 10029 USA

Phone:

(212) 201-2670

Web Address:

www.getpalliativecare.org

This website was created by the Center to Advance Palliative Care (CAPC) at Mount Sinai School of Medicine in New York. This site provides palliative care information for people who have serious and complex illness. There is a directory of hospitals, an explanation of how palliative care is different from hospice care, and an interactive questionnaire to help people find out if palliative care is the right choice for them or their loved ones.

National Hospice and Palliative Care
Organization

1700 Diagonal Road

Suite 625

Alexandria, VA 22314

Phone:

1-800-658-8898(703) 837-1500

Fax:

(703) 837-1233

Email:

nhpco_info@nhpco.org

Web Address:

www.nhpco.org

The U.S. National Hospice and Palliative Care Organization (NHPCO)
offers information on local hospice and palliative care programs across
America. NHPCO is committed to improving end-of-life care and expanding access
to hospice care with the goal of improving quality of life for dying people and
their loved ones.

PalliativeDoctors

4700 West Lake Avenue

Glenview, IL 60025

Phone:

(847) 375-4712

Fax:

(847) 375-6475

Email:

info@aahpm.org

Web Address:

www.palliativedoctors.org

This website was created by the American Academy of Hospice and Palliative Medicine (AAHPM). AAHPM is an organization of health professionals who help people with serious illnesses. The resources at this site include information on the benefits of palliative care, what palliative care is, and when to seek hospice care. There are also links to websites for caregivers, patient stories, FAQs, and how to find a palliative doctor.

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How this information was developed to help you make better health decisions.